Aa
My Neuro Appt.
I went to talk to my neuro about possibly going on long-term disability. He didn't agree with me. He says that I am not 100% disabled - physically or mentally. I do agree with him, but I have long term disability that is specific for my job - which I am unable to perform - cognitively and because of fatigue. With long-term, you do not need to be 100% disabled - you just have to be unable to perform your current occupation at a certain level. Nope - still won't approve it. He says that I need to stay active mentally - even doing part time work or volunteering. That's not going to help me out financially though - and if I can't work, then I can't work.
Here's another good one from him - If he doesn't see any more real disease progression on my next MRI, he says that he's thinking about taking me off of my DMD. What???? Isn't that the whole point of being on a DMD, so it helps stop the progression? I don't get it.
My family seems to have been cursed by the healthcare industry. Both of my parents died young because no one would listen to them and to their symptoms. They both died from cancer & other illnesses on top of it. Not only them, but other family members of mine, as well. I just get so frustrated with everything.
-Kelly
Here's another good one from him - If he doesn't see any more real disease progression on my next MRI, he says that he's thinking about taking me off of my DMD. What???? Isn't that the whole point of being on a DMD, so it helps stop the progression? I don't get it.
My family seems to have been cursed by the healthcare industry. Both of my parents died young because no one would listen to them and to their symptoms. They both died from cancer & other illnesses on top of it. Not only them, but other family members of mine, as well. I just get so frustrated with everything.
-Kelly
JJ, oh yeah, hahahaha, I like the DUMB and STUPID skit. It's funny, but so true of quite a few of them.
I like this warning sign:
This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.
and this one:
Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.
Thanks for posting the link - that IS pretty long. I'll have to read it gradually.
-Kelly
I like this warning sign:
This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.
and this one:
Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.
Thanks for posting the link - that IS pretty long. I'll have to read it gradually.
-Kelly
COMMUNITY LEADER
i just found the 'lies my neuro told me' one i mentioned
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
Warning its very long!
Cheers..........JJ
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
Warning its very long!
Cheers..........JJ
COMMUNITY LEADER
You have to fill out a lot of paper work, jump through hoops etc here you have the right to benefits, 18 weeks paid maternety, unemployment, vocational training, disability, vet, single parent, subsidised childcare, aged pension, carers pension, free medical etc all you do is apply, you wont get what you dont ask for. Some benefits have conditions attatched eg single parents need to be actively looking for work or in vocational training, after their youngest child starts school, if they get employment they may still get a part pension until their youngest child finishes school. Anyone can get a one off hardship payment of 1000, no questions asked. Obviously there are a few good things about being Australian, lol though our dental system is outrageous eg $20,000 to replace 3 of my daughters teeth.
If you are living with someone, anyone, you may need to prove your not in a live in relationship, your sexual orientation or gendar is irrelivant to the questions asked. The key is living together, if your in a relationship but in seperate dwellings then you get benefits. Btw if your both unemployed and in a defacto relationship then you get the same benefits a married couple is eligible to get, its treated the same.
Oh here is the dumb skit........
Epidemic of Disorders in Doctors
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.
Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.
DUMB doctors are comprised of two categories that are characterized by a) those who are feigning to be DUMB for monetary gain: "Medicalingering", and b) those who are not in possession of sufficient information to render intelligent diagnoses: "Factlessitious Disorder".
Physicians who are predisposed to this condition place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented to them.
This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.
DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Umistakable Physician Intelligence Deficiency or "S.T.U.P.I.D." since a STUPID physician is uniformly incompetent while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors and to determine the impact that physicians suffering from these conditions have on the health care system and their patients.
ROFL! There is more can't work out how to give you the link but if you type in
D.U.M.B. - Disorders in Doctors in the search this community box its comes up.
Cheers......JJ
If you are living with someone, anyone, you may need to prove your not in a live in relationship, your sexual orientation or gendar is irrelivant to the questions asked. The key is living together, if your in a relationship but in seperate dwellings then you get benefits. Btw if your both unemployed and in a defacto relationship then you get the same benefits a married couple is eligible to get, its treated the same.
Oh here is the dumb skit........
Epidemic of Disorders in Doctors
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.
Physicians who manifest the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a psychological condition known as "Doctors with Unexplained Medical Beliefs" or D.U.M.B.
DUMB doctors are comprised of two categories that are characterized by a) those who are feigning to be DUMB for monetary gain: "Medicalingering", and b) those who are not in possession of sufficient information to render intelligent diagnoses: "Factlessitious Disorder".
Physicians who are predisposed to this condition place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented to them.
This somatiform obsession with psychological etiology, "Psychosomatization Disorder" or "Psychologizing" is a distinctive characteristic of the illness and should be considered a warning sign that the individual is not rational and may in fact be DUMB.
DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Umistakable Physician Intelligence Deficiency or "S.T.U.P.I.D." since a STUPID physician is uniformly incompetent while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors and to determine the impact that physicians suffering from these conditions have on the health care system and their patients.
ROFL! There is more can't work out how to give you the link but if you type in
D.U.M.B. - Disorders in Doctors in the search this community box its comes up.
Cheers......JJ
I'm speechless really and ignorant of the bureaucratic BS you all must go through and have been going through and most likely still go through. What would it take to have an advocate for people who suffer from such a debilitating disease and ensure they get the proper health care, proper medication, proper nutrition, proper compensation?
Look at all the schmucks who claim welfare when they are ready, fit and able to do work of a 20 year old, robbing those who can't do basic things in life like take a damn shower or button their own shirt.
It makes me angry Kelly -- it really does.
Im not in the greatest mood or feeling good today so anything I type is going to come out negative and crass.
But...it is still BS.
What are you going to do Kelly? What are your options?
Lisa
Look at all the schmucks who claim welfare when they are ready, fit and able to do work of a 20 year old, robbing those who can't do basic things in life like take a damn shower or button their own shirt.
It makes me angry Kelly -- it really does.
Im not in the greatest mood or feeling good today so anything I type is going to come out negative and crass.
But...it is still BS.
What are you going to do Kelly? What are your options?
Lisa
You always seem to be rooting for me (no pun intended to the Aussies) and for the rest of us. And, yet, you've had your own troubled journey to bear, too. What a horrible experience for you and your son. I know it had to be so awful and sooooo frustrating to you!! And then to watch him die. Horrible, horrible, horrible!!!!
Yes, it is amazing, how things can go so wrong in the healthcare industry. It is very disgusting sometimes. But medical research has made amazing strides in new medicines, too. I have a love/hate relationship with healthcare - and it's teetering on hate too often.
Yes, it is amazing, how things can go so wrong in the healthcare industry. It is very disgusting sometimes. But medical research has made amazing strides in new medicines, too. I have a love/hate relationship with healthcare - and it's teetering on hate too often.
You would think that people with the diagnosis of MS have enough to contend with, enough battles for the physical and psychological turmoil that you go through.
THEN....this $hit.
I swear just by being a part of this community in the short time I've been here I can't believe some of the things I read. Seriously.
Although I have had the experience that my now deceased son who undergone 4 surgeries, (first one was an unsuccessful nissan fundiplication leading to the second one to dilate the esophagus and the surgeon coudnt retract the metal balls so had to allow it to go through the digestive system and retrieve it through his g-tube hole -- of course not knowing he punctured a hole in his stomach causing the contents to leak out into his peritoneum, the surgeon sewed him up. Third surgery was to place drains,that the CT showed abcesses and fourth to finally repair what he had did). Well days later, he had bilateral pneumonia. He was 13 months old and weighed 8 lbs. I wanted a second opinion and his doctor said he should be helicoptered to Boston Childrens. My insurance wouldnt cover it and wanted my son out of the hospital because we were in over 90 days. So off I went with my Dad and my brother with Ryan in the back seat with a suction machine and him with bilateral pneumonia with a temperature of 102.4. Insurance wise he couldnt stay in the hospital at that time (24 years ago). Only if I was sent home and readmit him. I wanted a second opinion since noone knew what was wrong. I went to apply for SSI? And they wouldnt approve. I was a single Mom.
When we got there within one hour he went into respiratory and cardiac arrest then intubated. Three weeks later, Ryan was terminally weaned.
To me that was the worst experience I've had with the government and health care. It wasn't about my sons life and quality of it, it was about money.
I wonder why it is so difficult for people with MS to get the care and the benefits they deserve? Who can speak out for you?
I'm glad that Bob has a suggestion for you and I agree with Shelly too.
I hope your paperwork at home will turn out for your benefit.
THEN....this $hit.
I swear just by being a part of this community in the short time I've been here I can't believe some of the things I read. Seriously.
Although I have had the experience that my now deceased son who undergone 4 surgeries, (first one was an unsuccessful nissan fundiplication leading to the second one to dilate the esophagus and the surgeon coudnt retract the metal balls so had to allow it to go through the digestive system and retrieve it through his g-tube hole -- of course not knowing he punctured a hole in his stomach causing the contents to leak out into his peritoneum, the surgeon sewed him up. Third surgery was to place drains,that the CT showed abcesses and fourth to finally repair what he had did). Well days later, he had bilateral pneumonia. He was 13 months old and weighed 8 lbs. I wanted a second opinion and his doctor said he should be helicoptered to Boston Childrens. My insurance wouldnt cover it and wanted my son out of the hospital because we were in over 90 days. So off I went with my Dad and my brother with Ryan in the back seat with a suction machine and him with bilateral pneumonia with a temperature of 102.4. Insurance wise he couldnt stay in the hospital at that time (24 years ago). Only if I was sent home and readmit him. I wanted a second opinion since noone knew what was wrong. I went to apply for SSI? And they wouldnt approve. I was a single Mom.
When we got there within one hour he went into respiratory and cardiac arrest then intubated. Three weeks later, Ryan was terminally weaned.
To me that was the worst experience I've had with the government and health care. It wasn't about my sons life and quality of it, it was about money.
I wonder why it is so difficult for people with MS to get the care and the benefits they deserve? Who can speak out for you?
I'm glad that Bob has a suggestion for you and I agree with Shelly too.
I hope your paperwork at home will turn out for your benefit.
Good catch! I'll have to check out my statements from my insurance company.
OK, I just went to the Center's website. My neuro is one of the five MDs listed as a neurologist there - so, I guess he's not one of the residents. Shucks. But, I'm still going to check my paperwork at home.
OK, I just went to the Center's website. My neuro is one of the five MDs listed as a neurologist there - so, I guess he's not one of the residents. Shucks. But, I'm still going to check my paperwork at home.
Look at your hospital bills. I was billed by Bennett because he "oversees" the nurse practitioner. If you are a doctor and bill me for services, then I have a good argument that I am your patient since you oversee my care.
Just a thought.
Bob
Just a thought.
Bob
Bob, that's a good idea. I'm not sure if she'll let me or not, but it is worth a shot. I have heard of someone wanted to go to another one for a second opinion and they wouldn't let them. They said they had to go outside of their group.
I would REALLY like to go see one of the "big guns." When I saw Vollmer at a discussion where I live, he was stressing the importance of starting DMDs as soon as you have a CIS. I told him that I was going to see another neuro there, and he doesn't really see it that way. He kind of acted like he didn't want to talk to me about it. I'm sure they don't like to step on their neighbor's toes.
Thanks,
Kelly
I would REALLY like to go see one of the "big guns." When I saw Vollmer at a discussion where I live, he was stressing the importance of starting DMDs as soon as you have a CIS. I told him that I was going to see another neuro there, and he doesn't really see it that way. He kind of acted like he didn't want to talk to me about it. I'm sure they don't like to step on their neighbor's toes.
Thanks,
Kelly
Kelly,
Try calling the clinical nurse coordinator and seeing if they will switch your provider or see if you can get an appointment to be seen by Jeffrey L. Bennett, MD, John R. Corboy, MD, or Timothy Vollmer, MD. These are the "Big Guns" MS Specialist at UCH. Many of the other docs are residents and fellows in MS and Neurology. The three docs I listed are considered to be some pretty well respected MS docs. Two are actually the co-directors of the RMMS Center.
Bob
Try calling the clinical nurse coordinator and seeing if they will switch your provider or see if you can get an appointment to be seen by Jeffrey L. Bennett, MD, John R. Corboy, MD, or Timothy Vollmer, MD. These are the "Big Guns" MS Specialist at UCH. Many of the other docs are residents and fellows in MS and Neurology. The three docs I listed are considered to be some pretty well respected MS docs. Two are actually the co-directors of the RMMS Center.
Bob
And what about atrophy and the fact that I haven't had any imaging of my t-spine in a year and a half? - even though I have lesions in my spine, and I have new symptoms on my right side that started 3 or 4 months ago.
I have a definitive Dx of MS. Actually, he's the one who Dx'd me. My last neuro was in a holding pattern with me for transverse myelitis for the lesions on my spine, even though I continued to get symptoms and progress. This new neuro said that I also have lesions & black holes in my brain - all in the key places - periventricular, infratentorial, etc. And according to him, I've had at least 3 clinical attacks. Even with all of that, he still didn't really want me to start the DMDs righ away. He wanted to wait and watch the rate of lesions that I was getting - like I'm a guinea pig or something.
My old neuro was local, and my new neuro is about a 2 hr drive. There's only a couple where I live. A lot of them are in the same group as my prior neuro, so I can't go see them (I think they frown upon that). Then there's a couple more here, but they're not on my insurance plan. However, I'm going to look them up again.
Thanks Shell.
I have a definitive Dx of MS. Actually, he's the one who Dx'd me. My last neuro was in a holding pattern with me for transverse myelitis for the lesions on my spine, even though I continued to get symptoms and progress. This new neuro said that I also have lesions & black holes in my brain - all in the key places - periventricular, infratentorial, etc. And according to him, I've had at least 3 clinical attacks. Even with all of that, he still didn't really want me to start the DMDs righ away. He wanted to wait and watch the rate of lesions that I was getting - like I'm a guinea pig or something.
My old neuro was local, and my new neuro is about a 2 hr drive. There's only a couple where I live. A lot of them are in the same group as my prior neuro, so I can't go see them (I think they frown upon that). Then there's a couple more here, but they're not on my insurance plan. However, I'm going to look them up again.
Thanks Shell.
OMG - he's SO wrong.
'
We put a lot of credit into MS specialists - but truth is, a good regular neuro can be just as much a specialist as they are. We suggest all the time here to get 2nds on the regulars, but I'm thinking in your case - you may need to consider a follow-up w/another simply due to this "real disease progression" comment. Did he say that as opposed to made up progression?
Your spot on w/your thoughts. You absolutely do not need to acquire more lesions to become disabled. The existing ones can wreak all the havoc they want at any given time w/out anything new popping up. If anything, we here quite often the opposite here. New small lesions occuring w/out any noticable signs.
Question for you - do you travel to see this specialist? Would a local neuro be more manageable?
Gosh Kell, I'm just stunned.
-Shell
'
We put a lot of credit into MS specialists - but truth is, a good regular neuro can be just as much a specialist as they are. We suggest all the time here to get 2nds on the regulars, but I'm thinking in your case - you may need to consider a follow-up w/another simply due to this "real disease progression" comment. Did he say that as opposed to made up progression?
Your spot on w/your thoughts. You absolutely do not need to acquire more lesions to become disabled. The existing ones can wreak all the havoc they want at any given time w/out anything new popping up. If anything, we here quite often the opposite here. New small lesions occuring w/out any noticable signs.
Question for you - do you travel to see this specialist? Would a local neuro be more manageable?
Gosh Kell, I'm just stunned.
-Shell
Right Sumanadevii, like I want my pay to be cut nearly in half. I can't see how anyone would want to go on disability. I actually LIKE my job. I went to college to do it, and now it really frustrates me that I'm having so much difficulties with it. When I had spoke to his clinical nurse she told me to get all the paperwork and bring it in with me, that she's sure that he would definitely agree to it. He is a jerk. I don't know what his deal is. It just makes me sick to my stomach.
JJ, thanks. I've never read DUMB or STUPID; I'll have to look for them. I wish our disability was automatically approved. I'd guess that you're not automatically put on it - but if you request it, then you can get it? And if you have a partner/significant other/husband/wife you can't get it or how does that go?
I'm not sure if it has to be the neuro or what to fill out your forms. Whenever I bring up my MS to my primary, she looks a little confused and tells me I need to talk to my neuro about those types of issues. I don't think she's really that informed on MS.
Thanks, Kelly
JJ, thanks. I've never read DUMB or STUPID; I'll have to look for them. I wish our disability was automatically approved. I'd guess that you're not automatically put on it - but if you request it, then you can get it? And if you have a partner/significant other/husband/wife you can't get it or how does that go?
I'm not sure if it has to be the neuro or what to fill out your forms. Whenever I bring up my MS to my primary, she looks a little confused and tells me I need to talk to my neuro about those types of issues. I don't think she's really that informed on MS.
Thanks, Kelly
COMMUNITY LEADER
Hey Kelly,
Have you ever read D.U.M.B and S.T.U.P.I.D? If you haven't you should just for the laugh, i'll try and find it for you and whilst i'm at it i'll find another good one which is something like 'The Lies my neuro told me'. Unfortunately what you experienced is not at all uncommon, some of the things on the Lies one could curl your toes, it has that omg factor and well worth the read.
IMHO the entire point of taking DMD's is to slow down disease progression or better, so you are right and your neuro has lost the plot lol!
I'm in another country (Australia) and our disability pension seems to be a lot easier to get, we still have hoops to jump through but some disabilities are automatically granted, MS is one of them and it has nothing to do with your % of abilities. Its just automatically granted, with additions for dependants, medical, rental assistance etc but gets complicated with defacto relationships. Over here your partner would be expected to be finacially and emotionally supportive of you if your living together, it sort of resembles the 'for better or worse' aspect of any committed relationship.
Ok i've gone off track, what i was thinking was inregards to your GP, here we only need the forms filled out by our primary doc, is that something you can do or does it have to be the neuro? Its probably a good idea to get professional advice about getting financial assistance in your part of the country, they at least would know all the hoops and holes.
Cheers...........JJ
PS For what its worth I too thought Ufrustrated was joking around :-)
Have you ever read D.U.M.B and S.T.U.P.I.D? If you haven't you should just for the laugh, i'll try and find it for you and whilst i'm at it i'll find another good one which is something like 'The Lies my neuro told me'. Unfortunately what you experienced is not at all uncommon, some of the things on the Lies one could curl your toes, it has that omg factor and well worth the read.
IMHO the entire point of taking DMD's is to slow down disease progression or better, so you are right and your neuro has lost the plot lol!
I'm in another country (Australia) and our disability pension seems to be a lot easier to get, we still have hoops to jump through but some disabilities are automatically granted, MS is one of them and it has nothing to do with your % of abilities. Its just automatically granted, with additions for dependants, medical, rental assistance etc but gets complicated with defacto relationships. Over here your partner would be expected to be finacially and emotionally supportive of you if your living together, it sort of resembles the 'for better or worse' aspect of any committed relationship.
Ok i've gone off track, what i was thinking was inregards to your GP, here we only need the forms filled out by our primary doc, is that something you can do or does it have to be the neuro? Its probably a good idea to get professional advice about getting financial assistance in your part of the country, they at least would know all the hoops and holes.
Cheers...........JJ
PS For what its worth I too thought Ufrustrated was joking around :-)
Unfrustrated...Nothing wrong with having your own opinion and voicing it. I sure voice mine and it is not always popular....Truly who cares? If people want only those agreeing with them then they should post...Only Answer if You Are in Agreement with Me...I would respect that and not post. As far as Kelly, she is open minded and would have no problem with a differing opinion.
Kelly...It makes me physically ill to hear what your doctor had to say. I hope you have enough sense to find another. Any doctor that won't back their patient when trying to get disability is a loser. Like we prefer NOT to work? Our disability will bring us what our paychecks did? So, he expects you to continue to try and eventually be fired for not keeping up? I won't even mention the emotional abuse of you now blaming yourself for not being able to do it. The man is a jerk.
Kelly...It makes me physically ill to hear what your doctor had to say. I hope you have enough sense to find another. Any doctor that won't back their patient when trying to get disability is a loser. Like we prefer NOT to work? Our disability will bring us what our paychecks did? So, he expects you to continue to try and eventually be fired for not keeping up? I won't even mention the emotional abuse of you now blaming yourself for not being able to do it. The man is a jerk.
Hi Ufrustrated2, Your smiley face has been accepted. :-)
Thanks for posting the link to the article. I'll take a look at it.
-Kelly
Thanks for posting the link to the article. I'll take a look at it.
-Kelly
>>I did not find particular remark to my inquiry and/or statement helpful to Kelly or me as a way of explaining something. It appeared to be more of a deliberate vicious response to point out my ignorance. I did not appreciate that.
wow, i should have put a smiley there or something. its my dry sense of humor i guess. there was zero negativity from me to you in my thoughts. my apologies then if it appeared that way.
and if i read your message wrong, well, now you know why i'm disabled. LOL
>>I am sure Kelly would love to read the article you mentioned. Perhaps post a link?
sure here it is:
http://journals.lww.com/neurologynow/Fulltext/2011/07020/An_Ounce_of_Early_Intervention__Can_early.15.aspx
wow, i should have put a smiley there or something. its my dry sense of humor i guess. there was zero negativity from me to you in my thoughts. my apologies then if it appeared that way.
and if i read your message wrong, well, now you know why i'm disabled. LOL
>>I am sure Kelly would love to read the article you mentioned. Perhaps post a link?
sure here it is:
http://journals.lww.com/neurologynow/Fulltext/2011/07020/An_Ounce_of_Early_Intervention__Can_early.15.aspx
I hope to write more of a response later Kelly. For now, I think this will link you to the article referenced.
http://journals.lww.com/neurologynow/Fulltext/2011/07020/An_Ounce_of_Early_Intervention__Can_early.15.aspx
It is excellent in making the point for DMD use in CIS and early MS. I would think that extends to those of us with a more established diagnosis as well. I know I am doing better after a year on Copaxone than I had for quite some time before that.
There is also some information in the article about MRI lesions, how lesions change (or don't) and docs who are too reliant on MRI evidence. I think you will find this very interesting. No doubt you will have another article to present at your next appointment ;)
Mary
PS - I think Unfrustrated is being sarcastic or tongue-in-cheek. He has been around long enough to be frustrated AND to know that nothing about disability is easy. Running into these health care brick walls time and again can get our defensive guard up but I really believe this comment was meant as comic support.
Do I dare say being disabled may be the easiest part of applying for disability? But what do I know? I peaked down the disability road once and found it much too scary to even contemplate. I'm chicken and crossing my fingers I can work for enough pay and insurance to get me to Medicare.
http://journals.lww.com/neurologynow/Fulltext/2011/07020/An_Ounce_of_Early_Intervention__Can_early.15.aspx
It is excellent in making the point for DMD use in CIS and early MS. I would think that extends to those of us with a more established diagnosis as well. I know I am doing better after a year on Copaxone than I had for quite some time before that.
There is also some information in the article about MRI lesions, how lesions change (or don't) and docs who are too reliant on MRI evidence. I think you will find this very interesting. No doubt you will have another article to present at your next appointment ;)
Mary
PS - I think Unfrustrated is being sarcastic or tongue-in-cheek. He has been around long enough to be frustrated AND to know that nothing about disability is easy. Running into these health care brick walls time and again can get our defensive guard up but I really believe this comment was meant as comic support.
Do I dare say being disabled may be the easiest part of applying for disability? But what do I know? I peaked down the disability road once and found it much too scary to even contemplate. I'm chicken and crossing my fingers I can work for enough pay and insurance to get me to Medicare.
Yeah, Raz - been there, done that. There's about a 10 yr difference between us, so we can play that game, too. It makes me angry that we even have to think about doing stuff like that. My neuro used to live in a city that is very liberal. Maybe he moved here to flee from them? Or maybe he's had several bad days, like you said?
I really appreciate your comments.
I really appreciate your comments.
Kelly, that might not be your imagination. I live in the south and bible belt country so things here are hard. I know things have changed a lot but still......
while my partner was sick and often in the ER and/or hospital, drs offices, we didn't let them know we were partners for that very reason. Of course there was an age difference and I've always looked younger then I am. ( ok maybe not so now lol ) so we got away with we are family. sometimes it does make a difference.
hope that isn't the case and maybe he was having a bad day.
while my partner was sick and often in the ER and/or hospital, drs offices, we didn't let them know we were partners for that very reason. Of course there was an age difference and I've always looked younger then I am. ( ok maybe not so now lol ) so we got away with we are family. sometimes it does make a difference.
hope that isn't the case and maybe he was having a bad day.
I'm glad you were finally awarded disability, Pam. I have a lot of issues, too. I've had bi-lateral optic neuritis, lesions in my spine & brain, cognitive issues, fatigue, spasticity, urinary issues, pain in my legs, fatigue, fatigue, etc.....you get the picture. For my long-term disability thru my work, they only pay coverage up to 1-2yrs for depression and things like that - otherwise it's up to I think age 70 without those problems. Although, all of this is very depressing.
Raz, I've been a smokin' dragon for a while now. I don't know if it's my imagination, but my neuro's attitude seemed to change once he found out the girl with me was my partner. Or maybe he spoke to my previous neuro and he's trying to protect him, so he's trying to back-petal from the things he originally said to me. Or maybe he just has a different mental-set than the MS experts out there. He should definitely try my life for a little bit to see how difficult it really is.
Ufrustrated2, I've had plenty of experience with the VA and SSD. My dad went thru the VA and was on disability after he had cancer the 1st time. And my mom was on SSD before she died, too. I'm not sure what you are saying. Maybe you're just saying it's hard to qualify and go thru the system? And if you can find the link, that would be helpful.
Raz, I've been a smokin' dragon for a while now. I don't know if it's my imagination, but my neuro's attitude seemed to change once he found out the girl with me was my partner. Or maybe he spoke to my previous neuro and he's trying to protect him, so he's trying to back-petal from the things he originally said to me. Or maybe he just has a different mental-set than the MS experts out there. He should definitely try my life for a little bit to see how difficult it really is.
Ufrustrated2, I've had plenty of experience with the VA and SSD. My dad went thru the VA and was on disability after he had cancer the 1st time. And my mom was on SSD before she died, too. I'm not sure what you are saying. Maybe you're just saying it's hard to qualify and go thru the system? And if you can find the link, that would be helpful.
I probably have interacted with "Veterans" in the 18 years of my nursing career in a hospital setting, but one thing that I never would inquire or have spoken about is their benefits that they receive from the government administration.
As far as SSD. No I have not had the luxury nor hope that I would ever have to experience that.
I did not find particular remark to my inquiry and/or statement helpful to Kelly or me as a way of explaining something. It appeared to be more of a deliberate vicious response to point out my ignorance. I did not appreciate that.
I am sure Kelly would love to read the article you mentioned. Perhaps post a link?
As far as SSD. No I have not had the luxury nor hope that I would ever have to experience that.
I did not find particular remark to my inquiry and/or statement helpful to Kelly or me as a way of explaining something. It appeared to be more of a deliberate vicious response to point out my ignorance. I did not appreciate that.
I am sure Kelly would love to read the article you mentioned. Perhaps post a link?
>>So people who are not totally disabled or incapacitated physically are considered able to work still -- but how about the job you are at?
i see you haven't been to SSD or interacted with many veterans who use the VA? LOL
100% disabled is quite different to whomever you speak to about it. and that can be terribly frustrating.
there is a good article in the latest neurology now about starting on DMDs and why some postpone and/or go off of them.
i see you haven't been to SSD or interacted with many veterans who use the VA? LOL
100% disabled is quite different to whomever you speak to about it. and that can be terribly frustrating.
there is a good article in the latest neurology now about starting on DMDs and why some postpone and/or go off of them.
Kelly,
so sorry you are having such a hard time. I don't understand doctors much. then again i don't trust them much either. I know they are only human and it must be hard to keep every patient's info straight in their minds. isn't that what the notes are for? Then when the notes aren't correct, you can't get them to correct them.
the DMD thing just isn't even logical. maybe his brain is out to lunch ( oh, I cleaned that thought up nicely ).or he read some other person's notes.
Your concerns about your job, yeah. What is 100% disabled ? can't think at all ?; can't use arms and legs at all? totally bedridden? At what point are you to disabled to work? I don't know those answers and not sure the doctors do either. darn sure it is different for employers, people struggling to keep working because we have to, doctors and the government.
sure it's important to keep mentally active as much as we can. same as physically active as much as we can. but being able to work everyday all day isn't always possible either.
If i was a dragon i'd be smoking! man, that has me all riled up for you. we need to rattle some cages or something.
:c/ Raz
so sorry you are having such a hard time. I don't understand doctors much. then again i don't trust them much either. I know they are only human and it must be hard to keep every patient's info straight in their minds. isn't that what the notes are for? Then when the notes aren't correct, you can't get them to correct them.
the DMD thing just isn't even logical. maybe his brain is out to lunch ( oh, I cleaned that thought up nicely ).or he read some other person's notes.
Your concerns about your job, yeah. What is 100% disabled ? can't think at all ?; can't use arms and legs at all? totally bedridden? At what point are you to disabled to work? I don't know those answers and not sure the doctors do either. darn sure it is different for employers, people struggling to keep working because we have to, doctors and the government.
sure it's important to keep mentally active as much as we can. same as physically active as much as we can. but being able to work everyday all day isn't always possible either.
If i was a dragon i'd be smoking! man, that has me all riled up for you. we need to rattle some cages or something.
:c/ Raz
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